(This is a post from Jessica, not Jake or Sara!)
Tonight after work I headed up to the hospital to visit Jackson! I wasn't expecting anyone to be there, when I called to tell Jake I was leaving work, they were just getting ready to go out to dinner with Sara's parents. (Her parents, Jackson's grandparents of course, left TN in the middle of the night last night and arrived here this afternoon.) From that long drive, they were tired so Jake said he wasn't sure if they would be returning to the hospital tonight. When I got there, the first thing I had to do was deliver my surprise to some of Jackson's favorite nurses! I went up to the 4th floor and was able to track down Amanda and Hope, and offered them a Jackson's Heart Team T-shirt. Hope already had one, a friend of hers attended the benefit in April and had gotten one for her. The shirts were thought to be gone that day, but there was a small pile of them found underneath some stuff behind the registration table! So, I thought, who better to have them, than all of Jackson's nurse "girlfriends"? =) I knew of Amanda from all of her messages on Jackson's guest book, and then I found her on MySpace, but what I didn't realize is that she works the night shift, so she had never actually met Jake and Sara! She just fell in love with Jackson. I talked to Amanda for a while, and she introduced me to Jackson's Care Partner, Kim, who I also gave a shirt too and then talked to her for a while. All of that was very emotional, even though this entire stay has been spent in PICU, he has made many friends elsewhere in the hospital, and nurses from the 4th floor that cared for him there go down to PICU to visit him. Well, after all that, I continued back down to the 3rd floor and went to Jackson's room. I think I had spent about 45 minutes up on the 4th floor, it was about 7:15 by the time I finally made it to Jackson's room!
I only had about half an hour to myself though, because Sara's parents, Larry and Barb, walked in, followed shortly after by Jake, Sara and Molly. Shortly after that, Candee (who I think is Barb's cousin...), came to join us. Candee visits Jackson tons because she only lives a few minutes from the hospital! That is so great of her because I'm sure there are times when Sara wishes she could be there and they are just too far away. Candee had been out of town so this was her first visit since we received the news. She stood over Jackson's crib and started crying. Then Barb started, then I think the rest of the room started tearing up! Took a few minutes for us all to calm down and then we all had a very nice visit with Jackson.
Here are some of the things Jackson is going through right now, maybe this will help some people understand why the decision was made. There has just been one thing after another found in his little body. Even when he seemed to be getting healthier, I think there was just too much other stuff floating around waiting to make itself shown. They did some genetic testing and found that a gene that causes CHARGE Syndrome is mutated. He only has a couple of the symptoms of CHARGE, so they aren't sure if it is a complete diagnosis or if there is something a little different going on. He is septic now, there are a few different bacteria/infections that have invaded his blood. The fluid retention is due to the fact that he is either in kidney failure or close to it. He is not urinating anymore, which is another sign of the kidney failure. He is being kept comfortable, they have increased his morphine dose. They are able to tell when it is wearing down by his vital signs. His lungs and airways are so weak right now that he would not be able to breath on his own if the breathing tube is removed. He has been fighting for so long, against so many "enemies", that Jake and Sara have decided to let Jackson's body make the decisions from this point on. They are staying at a hotel just a few minutes away from the hospital, so if anything happens they will be called immediately. It is heartbreaking to see this family, MY family, go through this.
As I was watching Porter's journey, and Kenneth's journey, I'm sure we were all feeling glad that it was happening to our own heart babies, but at the same time, you just can't wish this kind of pain on anyone. Now we are on the other side of this, wishing it wasn't was, wasn't our Jackson, and wishing that there would never be another heart baby angel. Abby and Lindsey have both sent messages to Sara, she told me that but not what they said, and I could just tell that she was so moved and touched by your messages. They read them all, even if they aren't able to respond. (They are a little busy right now, but I'm sure everyone understands!!)
Wow, I completely went off on a tangent there. I know people are waiting for this journal entry so I will get back to my visit! There have just been so many thoughts and questions going through my mind in the past few days.
So anyway... We did a lot of watching Jackson sleep. He still has quite a grip and will hold on to a finger. Sara then asked the nurses if she they could get him set up so she could hold him. (He still has a lot of tubes, wires, monitors, plus the breathing tube.) I think he is at 6 infusion pumps, plus the 2 line cleaners. Plus a whole bunch of monitor wires, drainage tube, catheter, all sorts of stuff! It was quite an ordeal and several people helped to move Jackson onto a pillow in Sara's lap. We had the couch moved right next the crib and pretty much just slid him over on the blanket, but it took a couple tries because wires kept getting tangled, or were too short! (Part of me just wanted to laugh at it, they did look like some sort of comedy team... trying to figure out which wire went where, what color wire was attached where...)
Sara got some quality time with Jackson, and I was able to get a few pictures. Normally I would just add them to Jackson's photo album and post a link, but I think for this time I will just be adding them all to this post. I got some family photos of Jake, Sara, Molly and Jackson. After Sara's arm got numb, he was passed to Grandma Barb. (The passing was a lot easier than the initial move, Mary and Tonya just picked him up, the person slid out, and the next person slid in, and he was put back down in their lap.) It was getting late by this point, maybe 9:30 or so. Way past Molly's bedtime! They decided it was time to get going so they could get her to bed, and I asked if I could hold him for a little while. I did give him lots of hugs and kisses, for everyone that asked me to. It was shortly after 10 that I decided it was time for me to go home. (That was why I didn't get home until midnight!) We got him snuggled back in his crib, I gave him one last kiss, and I left. It is so hard to leave him! I think I'll have to go back again =) Maybe Monday after work.
I think this journal entry is long enough. I had a lot to say, I was doing a lot of thinking on the way home! And damn did I hear a lot of songs that made me start to cry again! One said "I will love an angel instead." Then a few songs later "one more day with you." (old country song, drawing a blank on the singer though), and there were a few others. The last few days, just about anything sets me off, mostly just random lyrics in songs. It is now 2 am. Time for me to go to bed.
One more time, and I'm sure I will be saying this many more times in the days to come, on behalf of Jackson, Jake, Sara and Molly, Thank you to everyone. Your thoughts, prayers and messages mean so much to them, and to all of Jackson's family.
Oh yeah, almost forgot!! Here's the pictures from tonight:
Jake, Sara and Jackson
(Here you can see just how puffy his face is)
Jake, Sara, Molly and Jackson
Jake, Sara, Jackson, and me
Jake, Sara, Jackson and Nurse Amanda from 4west!
Molly being silly with Grandpa!
Jackson with Grandpa Larry and Grandma Barb
And, last but not least, me and Jackson. We <3 You Jackson!!
My Friday night visit with Jackson, and family!
(This is a post from Jessica, not Jake or Sara!)